And so it Begins.

I have been searching for a vehicle to communicate with family, friends and those that have been diagnosed with Liposarcoma. I can only hope that my journey and postings will offer some direction and hope. I don't know where my journey will lead, but it begins now. At this time, it looks like a Blog will allow me to provide you with an Internet site that we can communicate through as I proceed on this journey. This first post will be the longest as I will attempt to bring you up to date from a day early in July through today, October 18, 2008 From then on, they will be much shorter,(I promise) As many of you know, it all started with a slight pain in my right testicle in June 2008. I've always kept up with my doctors on everything from head to toe. By Jan. 15th I have always scheduled my full years dentist appointments, eye exam, physicals, urologist and dermatologist. Since age 47 I get an upper and lower endoscopy every other year. I knew the discomfort in my right testicle wasn't right. The urologist ran the normal tests for testicular and prostate cancer and ruled these out through a digital exam, sonogram and a blood work-up, including a PSA. He then put me on Cipro to rule out any chance of an infection, but nothing worked and the discomfort continued. Then my first break came when a different urologist, Dr. David McDermott (Sharon's friend) examined me. He immediately noticed enlarged blood vessels in my right testicle and ordered a cat scan of my lower right abdomen. There it was, a football size tumor wrapped around my ureter choking of my right kidney. A needle biopsy named it a Liposarcoma of a myxoid type cell. http://sarcomahelp.org/Newsletters/V01N05/Liposarcoma/liposarcoma.htm Unfortunately, one of the rarest of all cancers, (1 in 1,000)with a very low survival rate. My whole world has changed. I couldn't even spell it or pronounce it..( now those of you that know me, know I can't spell anything right anyway). Dr. McDermott so kindly offered to follow this through if I would allow him as he is a urologist and not an oncologist. He found an oncology surgeon that had just transferred to Anne Arundel Medical Center, Dr. Kurtis Campbell from Johns Hopkins with some 26+ year of experience, and 13 years as a surgeon. He is probably in his 40s and at the top of his game. The decision was made to remove the tumor immediately as my kidney was dying and would cause more immediate problems than the cancer itself. Surgery went well on August 26th with two top surgeons, Dr. Kurtis Campbell and Dr. David McDermott. They removed a 19cm tumor, my right kidney, my appendix and a portion of my small and large intestine. When I woke the surgeons were elated as they felt they got it all out in one neat package. Unfortunately, when the pathologist report came back, there wasn't a clean edge along the incision line, meaning cancer cells are left in my body. The tumor was classified as high grade, or 3rd stage cancer. Dr. Campbell suggested I visit Dr. Ettinger at Johns Hopkins as he is a sarcoma expert and well respected in the medical community. I've since spent a lot of time, night and day researching this and asking friends and family to research as well. There are eight facilities in the United States that claim sarcomas to be their specialities. I've decided to visit three to four of them before making a decision on my course of treatment. 1) Johns Hopkins http://www.hopkinskimmelcancercenter.org/ 2) Cancer Treatment Centers of America http://www.cancercenter.com/cancer-hospitals.cfm 3) MD Anderson http://www.mdanderson.org/Care_Centers/Sarcoma/ 4) Seattle Cancer Care Alliance http://www.seattlecca.org/ 1) Johns Hopkins top sarcoma oncologist Dr. David Ettinger ( Top 10 Cancer Doctors) offered little encouragement. He was very direct and showed me the statistics for survival published by Sloan Kettering. Only a 49% survival rate for the first 4 years, then it drops into the 30%. He wants to start chemotherapy immediately, but only offers a deadly cocktail with a 5% effective rate against sarcoma (If you survive the chemo). It is an extremely strong regiment of three chemicals that has to be administered in the hospital for 3 days, 4 intervals, 21days apart. Dr. Watson of Annapolis Oncology works closely with Johns Hopkins and can administer the chemo at Anne Arundel Medical center. This is appealing as it will keep me close to home, friends and my support network. Radiation is apparently not an option at this point. Since the tumor has been removed there is no target for the Radiologist to shoot at. Dr Ettinger is encouraging me to seek additional opinions and has agreed to review them with me to get the best. 2) The Cancer Treatment Centers of America are located in Philadelphia. I am going there the end of October, upon returning from MD Anderson. They even pay for my flight and pick you up at the airport. I like the way they have responded to me. They apparently attack the cancer with chemotherapy but feel they can administer the chemo at a higher concentration by keeping your body, mind and soul healthy with pastoral care, naturopathic medicine and advanced nutrition. They have two gourmet chefs, one is a pastry chef! 3) I've always known that I have a Guardian Angel and I think she just twisted my fate a little. MD Anderson in Texas treats more sarcoma cancer than all the other facilities in the world combined. They claim to better the national survival rate by 5% (I'll take it!) I was trying to get a quick appointment but with little luck. I had called my cardiologist, Kenneth Lee to tell him what was going on and to prepare him for the calls he was about to receive from the oncologist I had already seen, to see if my heart is strong enough. Of course he was shocked. We talked and I told him about my choices for 2nd opinions. Turns out that one of his current heart patients is a doctor from MD Anderson, who has traveled to Washington DC to specifically see Dr. Lee which has resulted in a Wednesday 7am appointment in Houston Texas for me! They want me there for 5-10 days for a full evaluation, and then to present my case at the Sarcoma Conference to come up with the best course! 4) Seattle Cancer Alliance was recommended by a fellow realtor, who took her husband there after he was given months to live (different cancer). He is happy and healthy 10 years later. They are ready to see me and have all my medical records, but I am afraid I am running out of time to start treatment. I'll know more after my next two appointments and will then make an educated decision if I have all the information I need, or want one more opinion I guess that is the end of this Chapter but certainly not the last chapter of the book! You now know what I know, so my next blog will be to bring you up to date as the journey unfolds. Warren